HealingWell
Search Close Search
☰

Entertaining Infectious Disease Appointment

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/12/2021 5:39 PM (GMT 0)
An infectious disease doctor I went to today confirmed while the EBV antibodies are always high on my tests, I do not have EBV, based on numerous, negative EBV DNA tests. No surprise there, as Garzie, dcd and others have suggested.

What was entertaining was he spotted Lyme treatment in my past and Lyme test. These were in records I had sent over a week or two ago. I was not going to waste any time mentioning Lyme, but he brought it up, asking me if I had syphilis, based on Bicillin treatment. I simply answered "no," as I did not want to get into the Lyme debate.

He then asked why I had been taking Bicillin, so I simply answered "Lyme." That got him started about how I couldn't have Lyme because it is not found in the area I live (metro-Atlanta). I then told him I have traveled some in my life, and once became lost on a mountain in Bristol, TN while running and had to crawl through brush up hills with only running shorts and shoes on in the summer with deer all over the place. Also, I had played golf in an area near Boston that same summer and had had gotten in woods some there due to some fine gold shots.

Without hesitation, he said "You cannot get Lyme Disease in Tennessee and there is little of it in Boston." HUH?

I used to get irritated. Now, like I did today, I simply said "So you have confirmed I do not have EBV. So is there any chance you know what might be wrong with me?"

He then told me to see a rheumotologist. I didn't bother telling him how many I have already seen and how many autoimmune tests I have taken. It all still points to Lyme, in my mind, and some of you have literally written that.

In two weeks, I have an appointment with LLMD I have seen over the years in Tennessee. Maybe he will have some answers, which may even be considering autoimmune. But, based on what the infectious disease doctor said, at least I won't have to worry about getting Lyme in Tennessee. It's not allowed there. smile
Posted 8/12/2021 7:30 PM (GMT 0)
*sighs* I’m glad you have a good attitude about the whole experience.
Posted 8/12/2021 7:47 PM (GMT 0)
I absolutely do not get the denial of lyme disease is various parts of the country. I get doctors not wanting to treat it, I certainly dont agree with that approach but I get it. I once had a doctor say I could not have lyme disease because I didn't have any deer on my property. Ive mailed in probably 10 ticks from my properly every tick had Lyme. Every tick!! Thats not a exaggeration it used to be $5 to mail them in for testing. I would mail in a couple each summer they raised it to $10 so i stopped.

Sorry to rant in your thread. Hopefully you ruled out EBV at this point.

Post Edited (skinny_joe) : 8/12/2021 1:50:00 PM (GMT-6)

Posted 8/12/2021 7:56 PM (GMT 0)
I had my new PCP tell me recently for a routine followup that Chronic Lyme is controversial, we've all been exposed and my issues are chronic fatigue syndrome and fibromalacia. Lol. Oh and my anxiety and depression is from being
ill but Lyme isn't the culprit.

How I maintained my composer in that exam room no idea. I cried on the way home though.

You've heard these from so many “ doctors” you'd think you'd be used to it but I have to admit it's still disheartening. Sometimes you can't blame them because of how they were trained in med school....esp the old timers.
Posted 8/12/2021 11:30 PM (GMT 0)
Hey skinny joe - Rant any time. We have to let go to someone. I've just been through it so many times over the course of 19 years, the ignorance of some doctors doesn't get to me anymore. Lyme and whatever else I may be dealing with does, but not doctors. It's gotten laughable, and I got what I needed from him with a definite no to EBV.

Sunflower - You are right about the "old timers." I've noticed younger doctors are much more open to Lyme, though my PCP is not young but very up on Lyme. Over the years, I have learned not to even mark "anxiety" or depressed" on symptoms sheet because once that is seen, that's where a doctor who is clueless about Lyme is is going to go. I spent enough of the early years with this being treated like I've lost my mind or I am a hypochondriac.

And there are some good doctors out there. But I've learned with the ones that aren't, I use them for testing or whatever else I may need. No longer will I let them beat me down mentally. I'm good enough at doing that to myself.
Posted 8/12/2021 11:39 PM (GMT 0)
These doctors are being paid off. They are not stupid. Anyone who would actually believe "there's no Lyme near Boston" would have an IQ of about 25. They are corrupt and they are being paid off to keep quiet and deliberately mislead patients. Probably by the CDC.
Posted 8/13/2021 12:45 AM (GMT 0)
Hey runningwild,

Are you being treated by the LLMD in Franklin, TN? If so, that's who I have been seeing for over 4 years.

You can def get tick borne disease in Tennessee. I got sick after a tick bite at the Cedars of Lebanon state park in Lebanon, TN back in 2015. The tick had been on me for probably around 36 hours when I found in on the back of my leg. My ELISA came back positive, but not enough bands for CDC positive. The only positive test I've ever had was ArminLabs EliSpot. The crazy thing is, if you research the difference in symptoms between acute Lyme, early disseminated, and late stage, I could follow my early illness almost to a T based on the descriptions of these stages.

I think we might be in similar stages of illness where after years and years of treating it's tough to say what the heck is happening anymore. Oral abx doesn't work much for me at all anymore and likely is causing more harm than good. I think I'm more confused than ever.
Posted 8/13/2021 2:44 AM (GMT 0)
I’m seeing Dr. K . Tuesday.
Posted 8/13/2021 12:48 PM (GMT 0)
When I first got sick and was desperately trying to figure out what was wrong with me I went to one of the best hospitals in PA and met with the head of infectious disease. I showed her all of my broken blood vessels around my ankles and explained clear Bartonella symptoms.

She told me only homeless people get Bartonella and to immediately stop all antibiotics. She said I had an auto immune reaction and to see a rheumatologist. Sound familiar?
Posted 8/13/2021 4:59 PM (GMT 0)
Yes. No Lyme near Boston. HA. If there isn't Lyme near Boston, no one should have it most anywhere.

Lymie 24 - Has to be same doctor. Cool Springs-Franklin. Is that same Dr. K you are seeing, fjdrill? He was the first LLMD I saw back in 2013, and I've seen him several times since. Originally, he had a pic line put in and I tried clindamycin. It was too much to handle as I started shaking so bad I couldn't hold the phone to call someone for 10 minutes and fever went up to 105.7. It took an hour to stop shaking and fever stayed high for about 4 hours. Tried it again next day (I had no idea what a herx was then if it was a herx) and similar happened.

I called the LLMD and asked if he could change it to Bcillin. Over time, with other meds thrown in, it did wonders. Was 85% better for all of 2015 and half of 2016. Then heart surgery (sorry I've told this story before). Haven't been the same since heart surgery. It just let Lyme and friends back in. But I find him very caring and really tries to look at a lot of angles. I also went to Biologix last year. While it helped, especially with EBV, something is still hanging on , and those at Biologix still are kind enough to keep coming up with ideas and contacting me. I trust both the LLMD and Biologix. Both are very caring.

And no, you couldn't possibly have gotten Lyme in Lebanon if I couldn't have gotten it in Bristol on a mountain full of deer as I crawled through brush. As the infectious disease doctor said yesterday, there is no Lyme in Tennessee smile.

Branin - Best move may have bene to tell the infectious disease doctor you are homeless or soon will be if you don't get rid of the Bartonella. And yes, very familiar. So what are you doing now to treat?
Posted 8/13/2021 8:51 PM (GMT 0)
Your doctor visit sounds like so many of my visits to specialists. You have a very stoic attitude about all of this.

So very frustrating, and that's an understatement...and yet so very familiar. The Bartonella...yeah it is the real nightmare co-infection.
Posted 8/14/2021 7:56 PM (GMT 0)
boreliob - It's not so much that I'm indifferent to doctors like that. It's just I've learned you can't beat ignorance anywhere in life, so I use doctors who have no clue about Lyme to get other questions answered, monitor kidneys and blood counts with blood tests, etc... I'm in total agreement about how frustrating it is. But with insurance covering a nephrologist to monitor kidneys, cardiologist to monitor heart and others to clear other possible problems, they become a necessary item.

So Bart is what kicks up with you when you aren't symptom free?
Posted 8/14/2021 8:47 PM (GMT 0)

BrianinPA said...

She told me only homeless people get Bartonella.

What do they get it from, dirty clothes? Seriously.

I get so worked up about stuff like this, because I just hate incompetence, especially when it’s due to willful ignorance. It just seems like a large amount of doctors are just a special breed of stupid. I have had doctors say inexplicably stupid things to me. They say things that completely fly in the face of common sense. Running Wild is right, though, “you can’t beat ignorance anywhere in life.” It’s just so hard for my blood not to boil.
Posted 8/14/2021 10:05 PM (GMT 0)

running wild said...
boreliob - It's not so much that I'm indifferent to doctors like that. It's just I've learned you can't beat ignorance anywhere in life, so I use doctors who have no clue about Lyme to get other questions answered, monitor kidneys and blood counts with blood tests, etc... I'm in total agreement about how frustrating it is. But with insurance covering a nephrologist to monitor kidneys, cardiologist to monitor heart and others to clear other possible problems, they become a necessary item.

So Bart is what kicks up with you when you aren't symptom free?

I have a similar approach to utilizing doctors for what they can do, and optimizing ad hoc; I have been able to get Doxycycline without a problem from most Dermatologists, for instance. Blood Pressure meds, no problm. Have a sleep apnea machine Rx'd, got it. MedicalMJ for PTSD and more...I like to look at the positive side. Adding to this on my "no more complaining" approach, I also got Cholestyramine via the "high cholesterol" route, knowing that it will clear out some baddies, was super-lucky to find a very smart and competent lady who (mostly) listened to me until I had the audacity to suggest that infections and concussions can very much cause psychiatric symptoms, and hey what do ya know it starts with three-B's (u all know Bart, Babs, Borreli) and EBV, CMV my nerves again---

it came down to me daring to have some "teaching moments" with them (there were several, maybe they were hoping I would cave from having a room full of interns hearing me, just to get ONE REQUISITION FORM to get the IGenex test--heaven forbid I get a Galaxy Bartonella test included well only if it's on my dime and not theirs it's okay... and yes I'm pretty now I'm "that guy"... always talks about infections and concussions, Minocycline, THC is antibacterial AAAAND it all falls on deaf ears, or the sort of mind-bogglingly unfathomable incompetence one only finds (often, okay but not always) in Florida, sry I can confirm incompetence happens a lot.. I'm from here lol /end rant

So yeah the Bartonella, the nightmares are absolutely bonkers, and lately have been having these "phantosmias"
I keep having this one that smells like (sry for details here) diarrhea, vomit, sour milk, and rotting--(however I am in Florida so maybe COVID and very hot weather is killing many creatures, not just humans sorta like being in a war and kinda not wanting to know how much death is occurring :/. ) is the only way I can describe it, yes it is probably decaying animals from the hotter weather too. (!)

and funny how these olfactory symptoms (no smell/weird smell, taste/no taste etc) are getting more attention with COVID-19/delta variant symptoms/signs.

After some intense marijuana therapy, I experience a die-off (neuro-herx)and notice symptoms worsen then clear, like 1 steps back, two steps forward...

and well... NOT symptom free, still having some Babesia-like cold nightsweats, tender soles again, unrefreshing sleep

The "Brain On Fire" is very much what I'm feeling, there is no mistaking it. btw...you guys if you haven't seen that movie.. ^^^^^^ the sound work is SO REALISTIC, like extremely good high-definition sound.

maybe Bartonella increases chances of homelessness ten-fold or something I read before...just as schizophrenics are 10X as likely to have borreliosis/bartonellosis/toxoplasmosis...

But I digress... * sigh *

Well Bartonella is terrifying because it gives you zero fear and weirdly draws you towards your enemies instead of away from them!

Post Edited (borrelioburgdorferii) : 8/14/2021 6:50:23 PM (GMT-6)

Posted 8/14/2021 10:45 PM (GMT 0)
BB,
Maybe you’re smelling mold. Florida should have as much as Georgia, if not more, especially if the construction and building maintenance practices there are as incompetent as they are here.

My bedroom in my parents’ house used to stink like bad breath. It was mold. I used to smell what I thought was a gas leak around the back door. It was the loathsome yellow colony growing on the floor joists under my bedroom along the back wall of the house.
Posted 8/15/2021 12:44 AM (GMT 0)
Hey WBF,
Yeah humidity equals more mold, maybe it's that foul-smell.
Posted 8/16/2021 12:17 PM (GMT 0)
WBF can I please ask your current treatment? Are you currently treating both Mold and Lyme or just the Mold?
Posted 8/16/2021 1:17 PM (GMT 0)

sdarrah said...
WBF can I please ask your current treatment? Are you currently treating both Mold and Lyme or just the Mold?

I am living in my car to avoid mold as best I can but am still exposed to mycotoxins outside the house that I can both smell and feel symptoms from.

I take Japanese knotweed and houttuynia for Lyme/bart maintenance. I take a lot of supportive supplements - digestive enzymes, Detox Pure Pack (vitamins, minerals, fish oil, etc), TUDCA, melatonin, acetyl-l-carnitine, milk thistle, hawthorn, l-lysine, Xyzal and Cromolyn sodium and Vit C for MCAS, Mimosa pudica for ropeworm, parasites, and gut scrubbing, and Nystatin (daily) and Fluconazole (3 days a week) for yeast/mold control, S. Boullardii and probiotics.

Binders - chlorella and charcoal (just finished a bottle of GI Detox

Exercise - walking

I am probably forgetting something. I still have boxes and bags of other drugs, supplements, and herbs to treat just about anything, as needed.
Posted 8/16/2021 1:47 PM (GMT 0)
WBF I asked because as you know I tested positive in Dec 2020 for exposure to severe levels of black mold I had been exposed to in my work office, a result of a huge water damage inxident 10 years ago! I left the office and have worked from home ever since and began treating for mold w/Dr M R out of Washington State, he immediately stopped my Lyme/bab/bart treatment and I have not been treating since for it.

I lost my independence since I began mold treatment and stopped treating Lyme and Co. It just dawned on me after the Doctor mentioned last month that we will probably need to go back to looking at Lyme. THAT IS WHEN MY DECLINE began and I lost my independence.

I reviewed my personal notes and the timeline and I can see that although removed from the mold and some symptoms got better, I got worse and have many babs symptoms that have progressed and/or returned.
Posted 8/16/2021 3:29 PM (GMT 0)
sdarrah,

I set up a new post “For sdarrah” to respond instead of posting here on running wild’s thread.
Posted 8/16/2021 4:28 PM (GMT 0)
WBF - Don't worry about posting on this thread for sdarrah. Anything that helps others is good to see. I always look at posting as a way to make a new thread for everyone.
Posted 8/16/2021 4:48 PM (GMT 0)
First, running wild, sorry about the taking over of your thread, I know about how in the South, Lyme supposedly doesn't exist...if anything it's more prevalent (think "delta variant") but the real disease is ignorance.
Posted 8/16/2021 6:09 PM (GMT 0)
borrelio - Same as I wrote to sdarrah. Whenever I post something, it becomes "our" thread. It's an exchange of ideas that can go any place. I just appreciate the responses and different conversations.
And yes, ignorance is a disease, and it becomes a disgrace when such supposedly supremely-educated doctors display theirs.

The thought that the fact people travel all the nation and, maybe, world is not even considered either.
Posted 8/16/2021 6:59 PM (GMT 0)
RW, how are the new symptoms like swollen digits, watery eyes and mouth ulcers? have they disappeared?
Posted 8/16/2021 9:47 PM (GMT 0)
Mouth ulcers have been gone a couple weeks of weeks. Eyes itch some but not as bad. Swelling or “mild lumps” still at end of fingers on right hand.

Started zith a couple days of weeks ago. Haven’t added a second fir Bart but still taking Bicillin and low amount of monolaurin. It feels like autoimmune type symptoms but not sure if that or part of a herx. For instance, low fever is back in afternoons since starting zith.
✚ New Topic ✚ Reply
12